Broken_Shell

Hugs! I hope that these tests will lead to some answers, and more importantly some improvement in your life. ~ Broken_Shell

Oh boy... I could not say enough on this topic. Lucky for all of you, I am not feeling up to saying much right now My autonomic symptoms are very driven by GI activites - everything from eating, to bowel movements, to stomach "growling" or passing gas. I think it is safe to say that I pretty much dread having a bowel movement because of what it does to my body, and when I wake up and have a BM even before eating breakfast I know it is going to be an awful day. I get the symptoms (light-headed, woozy, shaky, just feeling VERY unstable, nauseous, etc.) before the BM as my body is "getting ready" and after the BM. I have walked into the bathroom many times only to have a BM and then need to crawl out afterwards. I think it's just because there are SO many autonomic functions involved in running the GI tract and diverting blood and other resources to it, and our bodies just can't adjust to that. Then, there are all of the neurotransmitters and hormones involved which are probably out of whack or inappropriately responded to by our bodies. Also, the BM involves moving and loosing a large volume from our bodies, so there is a lot of necessary shunting and balancing of resources and blood that our bodies just can't handle. I also frequently drop my blood sugar after passing a BM. It's like a big vortex that just takes everything out of me. No doctors seem to understand when I explain this to them, so if anyone has any ideas to help PLEASE share them. ~ Broken_Shell

Hi Carinara, Thank you for the update You seem to have a lot of concern about taking the anti-histamine during the day. Did you read this recommendation about Zyrtec or general anti-histamines? With the older anti-histamines you can experience a lot of side effects like drowsiness, dizziness, and dry mouth which can be difficult to manage during the day, but if you are not experiencing any side effects during the day when you take the Zyrtec, then there is no reason to worry about taking it then. You should take it at the dosages and times that seem to help your symptoms the most, which unfortunately means trial and error. I hope that helps. Let us know what you decide about the H2-Blocker. ~ Broken_Shell

Lisabeth, Are you still there? How are you feeling? Any change or improvement in your symptoms? Have you been in contact with your doctor? ~ Broken_Shell

Hi Maxine, How frustrating! Did the radiologists reading the latest scan have the old images for comparison? I am not sure what to suggest, but I would bring up anything and everything to the doctors. I know how you feel, but they are not the ones living through what you are, and it is your right to keep on bringing things up and getting additional opinions until you get some resolution. Gentle Hugs, Broken_Shell

I am so sorry that you are having such a difficult time honey! I wish I could zip over to Kansas with a hug and a box of kleenex. You are considering the Procrit... what are your H&H like? Thinking about something like Neurontin or Lyrica for nerve pain might be worth a try. Have you been able to tolerate any of the benzos? That might help things settle things down a bit. Keep in touch and don't give up! ~ Broken_Shell

Also, what symptoms does it help, what side effects do you have, and what time of day do you take Xanax? Thank you so much.

Erika, You should hear the "Cheers" theme song playing when you come to this website! Yesterday I was at the grocery store... blood pressure and blood sugar were low, and I wasn't feeling well at all. I got a dirty look from an elderly gentleman sitting in the chair next to me with his shopping cart and cane because I had to yell down the aisle to help my mom find what I needed her to pick up for me. His expression said it all... "you're a healthy young lady, just off your behind and do your own shopping instead of telling your mom what to do". It is SO frustrating that our families, friends, strangers, and even doctors make incorrect assumptions about our health. Just know that all of us here really DO understand and we support you 100%! As long as you know that you are trying and doing the best that you can, that is all you can do for now. I would cherish the opportunity to work long hours, do my own shopping, take care of others, socialize, etc. Remember that it is both a blessing and a curse that we can truly realize how precious these activities are! Kudos to you for going in at all to work and for continuing to pursue your masters despite dysautonomia. Sending Hugs and Support, Shell

Hi All, I have been trying small doses of clonazepam when I get big adrenergic symptom surges. It helps some, but makes me ache all over like someone beat me up. The doctor is going to call in a prescription for Xanax to try instead. I know there have been posts about benzos in the past, but if anyone has any good or bad experiences with Xanax that they would please share I would really appreciate it. I am SO sensitive to meds - I have been literally taking 1/8 pill of the lowest dose of clonazepam. I want to try something else that might help without causing the aching so bad, but I am always concerned about taking something new because I have had SO many bad, scary, and inappropriate reactions to medications... you know the story! ~ Broken_Shell

We are all here for you Amy! Right now my GI tract is creating an autonomic nightmare... like you, I don't know which is driving which! Let's both just scream on the count of three, ok? 1.... 2.... 3! Hugs and Support, Broken_Shell

I had very severe colic for my first year of life, then no GI issues for a couple of decades. One of my first symptoms after developing dysautonomia was severe constipation. I stopped having spontaneous BMs for over a year and was large-volume enema dependent. Ironically, at the same time I developed rapid gastric emptying, and began to have symptoms of so-called "dumping syndrome". The tests show that my stomach empties twice as fast as a normal person. In the past year and a half I have entered a phase of GI hypermotility and too many BMs. I know my GI tract is all discoordinated, but it is due to the dysautonomia and not anything that I ever struggled with beforehand. I wonder if it relates to the origin of the dysautonomia... mine had an abrupt onset verses someone who has had symptoms their entire life. ~ Broken_Shell

Hi Steph, Sorry for your frustration. Disability is a long process. I also had many, many pages of packets and on-line information to fill out. I also had to have a third party complete forms, but I was not asked about a mental exam. My doctors all sent in their records upon request. I think that might be better than you sending them in just so that there is a not a question as to whether or not you are somehow "withholding" complete records, so you might want to give your doctors a call to make sure that they got the request and are planning to submit the requested material. I went through the process about a year and a half ago and was approved on my first application, but it was a long and timely process. Good luck! ~ Broken_Shell

Hi Tilly, I know this has come up on the forum A LOT... it helps though to know that we are all struggling with mornings! If you do a search, I think that there are a lot of posts on the topic. Happy reading ~ Broken_Shell

Did your check your BP? I have gotten this as a reaction to taking midodrine and increasing my BP above what my body is used to. ~ Broken_Shell

Hi Tilly, I believe that this is a common symptom of dysautonomia, but it is not one that I frequently experience. I sometimes experience a chest tightness or feel short of breath, and on rare occasions I have actual pain. I don't really experience tachycardia very often (I have the 30 bmp increase in HR from supine to standing, but it's from like 60 bmp to 90 bmp), so I think this symptoms is likely more common in people with HR > 120 bmp. ~ Broken_Shell

Hi Alicia, I don't suffer from these symptoms, but I do experience a wide array of inappropriate autonomic symptoms related to any gastrointestinal activity or stimulation. I wonder if maybe you get these symptoms because the smell of food gets your GI tract stimulated? Does it only happen with certain foods? Hmmm.... that's my only thought. ~ Broken_Shell

Hi Carinara, Without knowing your symptoms and if you can relate them to a certain trigger, I will send my few thoughts on your question... An adrenaline surge will cause your heart to speed up inappropriately. Histamine on the other hand is a vasodilator, so it dilates your blood vessels and drops your blood pressure, so your body releases adrenaline to speed up your heart in order to compensate. Well, this is what happened in someone with a working autonomic nervous system... which we don't have! If you have other "histamine" type symptoms like flushing, itching, nasal and eye congestion, or if you have a low BP, then the cause may be histamine rather than a primary adrenaline surge that isn't occuring as a reaction to exess histamine production. The best thing is probably to try one medication, and if it doesn't help then try the other. Maybe try the Zyrtec first sometimes and the beta-blocker first other times when you have the same symptoms and see if one is more helpful. You might need both medications anyways though. I hope that helps some at least. Good luck! ~ Broken_Shell

Hi Carinara, Like Julie said, the newer anti-histamines like Zyrtec should not make you drowsy. Since everyone responds to things differently, you might want to take the first couple of doses in the early evening once you are home from work. Let us know how it goes! Good Luck, Broken_Shell

Hi Valerie, Thank you for sharing your story. I am glad that you have a good doctor in Dr. Grubb. I have never seen him, but have heard good things about him. Welcome to the forum! I hope that you will find us to be supportive and informative. Kudos to you for pursuing PT school. I had to leave pharmacy graduate school just over two years ago due to the severity of my dysautonomia. I was less than 9 months short of graduating, but just too ill to manage clinicals. I look forward to reading your posts. ~ Broken_Shell

Hi Rylen, Welcome to the forum. I am sorry to hear about your troubles, but I hope that you will find guidance and support here. Have you talked to your primary doctor about a referal for specific autonomic testing? Perhaps a tilt table test would confirm a diagnosis. Have you looked in electrophysiologists in your area? Are you experiencing other symptoms? If you search the archives, you will find that many of us have a large collection of debilitating symptoms. I hope that you find a good physician soon and get some answers so that you can get back to enjoying your family. ~ Broken_Shell

Maybe it's because many of us don't get much sunlight or can't tolerate dairy products...? I have been on the prescription 50000 IU vitamin D twice a month (after a weekly course for 6 weeks) for over a year, but my values are still lower than we'd like too. It's interesting because vitamin D is actually a hormone and it does so many things in the body. It makes me wonder if ANY of my symptoms would be resolved with better vitamin D levels. I wonder the same thing because I also have a chronically low ferritin. ~ Broken_Shell

Hi KayJay, I (disclaimer since I am not a licensed healthcare professional) believe it would be safe to try the CoQ10, but I would mention it to your doctor just so they have it in your records that you are trying it. Just start with a low dosage and monitor all of your symptoms to see if anything improves or gets worse. There are several theories with evidence supporting them to various degrees about the usefulness of this supplement for various conditions, as well as a belief that some drugs, like beta-blockers, can deplete natural stores of CoQ10. You might find this link helpful... http://www.nlm.nih.gov/medlineplus/druginf...oenzymeq10.html ~ Broken_Shell

Marni, I am sending you a hug of support and strength to start this new chapter of your life. I know that we can only do so much, but please know that those of us on the forum are here to support one another. Regarding the migraines, what are you currently taking that has not been working? Keep in mind that a stress headache is different than a migraine and might respond to different treatments too. Hugs Some More, Broken_Shell

Hi Emma, Welcome to the forum. I am sorry to hear about your suffering, but I am glad that you have found us here! I hope that you will find answers to some of your questions as well as support. We understand what you are going through, and it sounds like you have had a fairly thorough work-up and diagnosis. I hope that you can find a doctor that will commit to continuing to work with you until you see more improvement. Looking Forward To Seeing You Around The Forum, Broken_Shell

Hi Sara, I have a pituitary microadenoma as well. At first I thought "OMG! I am scared! What does this mean? Is it causing my symptoms?" I was reassured by my MD that it was nothing to worry about, maybe just monitor "every so often". Do you have visual problems or severe headaches? Do you have abnormal menstrual cycles or an elevated prolactin level? If so, these things might be related to the microadenoma. Let us know what your doctor says. In the meantime, think positive thoughts ~ Broken_Shell